Bashir Hanif, MD, FACC, FSCAI
National Registries are compilations of patient information all across the country that has been taken out of medical records and assembled by medical organizations and medical specialty groups to create large data repositories. These repositories give providers opportunities to understand how clinical treatments are related to outcomes, make evidence-based decisions about how to care for patients and improve patient care and outcomes. Registries also allow providers to benchmark their quality metrics and measure their efforts against industry standards.
Registries are gaining recognition for the many benefits they offer providers, patients and the healthcare industry overall. Providers — who are now being paid based on their ability to deliver quality patient care — appreciate the intelligence registries offer. Patients benefit from registries because they help providers learn about diseases over time, and they also enable providers to develop patient-specific, evidence-based treatment plans. Plus, data from registries can be used to drive progress across the entire healthcare industry.
Unfortunately, there has been no proper cardiac registry database in Pakistan. Pakistan Society of Interventional Cardiology (PSIC) soon after its rejuvenation realized the importance of the National data registry immediately and started making efforts to start the national registry namely Cardiac Registry of Pakistan (CROP). Pakistan Cardiac Society was also taken on board along with the Health Research Advisory Board (HealthRAB) – an NGO promoting health research in Pakistan. HealthRAB agreed to provide unconditional grants/logistic support for CROP. The operations and utilization of CROP shall be defined pursuant to the CROP terms and conditions
Participation in the CROP registry was stressed upon in cardiac catheterization laboratory (CCL) Standards and Best Practice Guidelines 2017, prepared by PSIC. Over twenty leading cardiac centers have already adopted CROP-the CathPCI Registry. Recently formulated national interventional cardiology board (NICB), in a written submission to the Supreme Court of Pakistan, has also desired adoption of CROP by all institutions. College of Physicians and Surgeons Pakistan has also mandated CROP for accreditation of Interventional Cardiology fellowship program in any institution. Furthermore, the Supreme Court has also endorsed the database requirement and all health care commissions, have agreed to make mandatory for the Cath Labs. to adopt CROP – the CathPCI Registry. Punjab Health Care commission has already accepted the concept of such national cardiac registry for Pakistan.
We planned to launch the registry nationwide in 2016 at Pakistan Live meeting in Lahore, where all institutional representatives were briefed on the importance of starting the National Database Registry and asked to sign a memorandum of understanding (MoU) outlining the international standards terms of reference (TORs) for confidentiality and security of the CathPCI Registry. It was a herculean task to convince everyone to participate in CROP – the CathPCI Registry because of obvious and understandable apprehensions and concerns for confidentiality as well as security of the database. The first CROP report was presented at Pakistan Live annual meeting in Islamabad in 2018.
CROP is being managed as per international standards and regulations for any national registry. An international standard MoU with all the TORs regarding confidentiality and sharing of data are outlined in it and all participant institutions sign it before actively participating in CROP.
CROP data is governed by a steering committee that has members from all the participating centers